Since there are several types of Ehlers Danlos Syndrome and everyone living with the diagnose may have varying symptoms and varying severity of their symptoms, I can only speak for myself for the most part, but there's also some general things that many with EDS suffer from. I don't think I've shared before how EDS is affecting me so thought I'd do that now while having just pulled an all nighter due to painsomnia from severe back pain that nearly had me going to the ER some hours ago.
I have as I've mentioned before, the hypermobility type of EDS. The hypermobility type is generally known to be the most painful but least dangerous type of EDS.
Some may consider me a relatively mild case, others may say I'm hit hard. It all depends on which symptoms you look at.
People with the hypermobility type EDS tends to dislocate and/or sublux and have hypermobility in pretty much every joint. While I'm relatively spared from random full dislocations- I've probably had a few but only one I know for sure and had to force back in place, I do have a lot of subluxations or partial dislocations as they're also known as, and that happens many times in a day, every day and even in my sleep. The first thing I do when I wake up is to sort of go through my body to feel if everything is in place, and pop a few joints back in place before I get out of bed.
Every step I take has to be with full attention from me or my ankles may just fold under me or a knee flop backwards with such force that there's a sickening crunch in the joint with instant severe pain as a result. To hopefully make it easier to read, I'll write a list of my personal experience of EDS.
- Hypermobility: Generally all over, including all the small joints in fingers and toes. But I'm not a contortionist like some would expect from EDS.
- Dislocations and subluxations: Little or no trauma needed. Just to mention some frequent ones, my ankles can sublux in mid step and my thumbs can sublux from just typing on a touch screen and something in my wrist sublux or dislocates even when my wrists are immobilized in custom made splints.
- Muscle fatigue: Something has to try to keep my joints in place, and what my ligaments doesn't do, my muscles has to compensate for. My muscles may work as much as 300% more than in a normal person, and that's just when doing such basic things as standing up. My muscles can't even fully relax in bed!
- Debilitating pain: Joint pain from hyperextension wearing and tearing more on a joint than if said joint was always within normal range. Muscle pain from always compensating for the hypermobilty, plus pain from any acute things such as a bad sublux or similar. Extreme "growing pains" when younger.
- Chronic back pain: From suspected cervical instability, locked discs and vertebrae and discs slipping around. The full cause is yet to be found but have pain from skull base down to tailbone and extra bad in some areas. Have reason to suspect bulging discs may be behind some too. Waiting for proper scans.
- Insomnia: I don't know if and when I get to sleep, or what quality of sleep I'm getting, I often wake up many times during my sleep for various reasons and sometimes the insomnia is painsomnia (which is the case as I'm typing this, it's 8:45am and I haven't slept yet)
- Headaces: General headaches, spinal headaches (feel them coming from neck, might be cranio cervical migraines), migraines. I have headaches pretty much all the time but only notice the bad ones due to being so used to headaches.
- Heavy periods: Unless I am on hormone treatment, I will bleed through anything, several times per day (if I don't change every 1-3 hours) on the worst days of my periods that also lasts longer than normal. My periods can also be very painful.
- Acid reflux and heartburn: Something I've had to deal with since a very young age and still get random flares with, sometimes without being able to tell how or why.
- IBS like issues: I can be constipated on prunes and loose on Morphine when it should be the opposite, and my intestines pretty much have their own life and usually behave okay if I avoid certain things. My worst IBS symptom is cramps.
- Stomach shutting down: I don't have gastroparesis like some with EDS has, but at times my stomach just goes numb, no feeling of hunger or anything and no sounds at all, and I tend to have pretty low appetite to begin with.
- Slight bladder issues: Sometimes can't pee, sometimes can't feel my bladder and only go to the bathroom twice in a 24h period despite drinking a lot of fluid and sometimes I don't empty my bladder completely when I go.
- Broken body thermostat: I can't always tell if it's warm or cold or I sweat when it's cold and freeze when it's warm.
- Dizzy spells: Dizziness that has been very close to having me pass out many times, can happen completely randomly or when my body thinks it's too warm (even when it may not be warm at all).
- Heart rate jumping: It can jump from about 75bpm to 130bpm from just standing up even if I stand up slowly. Also frequently have resting heart rate of about 90bpm. Has not been properly investigated.
- Soft velvety skin: My skin is only mildly elastic but very soft and my hands shows no signs of many years of physical jobs.
- Skin that blisters easily: I can have my feet literally be eaten by shoes, even Crocs can give me blisters.
- Scars: I don't have any surgery scars, but some scars from minor injuries are wider than the injury and with very thin skin. Also have keloid scars from very minor things.
- Striae: Stretchmarks that are wide and almost kinda purple, stretchmarks in places where people don't normally have stretchmarks regardless of size.
- Local anesthesia: Works poorly and I learned that the hard way when having milk teeth taken out as a child.
- Slightly high and narrow palate and dental crowding: There wasn't nearly enough space for all my teeth, have had four adult teeth taken out and wore braces in my teens.
- Medicine allergies: Pretty severe reactions to a couple of different antibiotics, less severe reactions to a couple of other kinds.
- Resistance to painkillers: My pain is impossible to treat with anything weaker than morphine. And I can get several kinds of heavy duty pain meds at the same time and still not be pain free and read a book while the pain is manageable. I've never been high from any kind of pain medicine, even before my pain was severe enough for needing morphine strength medicines daily.
I may have forgotten some now, but the things that really affects my quality of life and how I live is the debilitating pain and fatigue. Even doing very minor things that people without EDS take for granted, can be very tiring for me or even send me to bed, or cause a pain flare that I can barely handle at home. The pain in my back, hips, knees and ankles is what's affecting my mobility the most and the reason I'm now using a wheelchair. I can only stand up for a few minutes before the pain gets so bad I just want to scream so obviously such basic things as standing in line in a supermarket can be enough to send me to bed in excruciating pain after, because if I've been walking in the supermarket, that adds up to the standing too. My walking ability has decreased rapidly from being able to walk several miles in a day less than a year ago, to now only rarely manage to walk further than to my parents before the pain and fatigue hits so I may need to rest for hours after. In the wheelchair I can be out and about much more and suffering a lot less afterwards and not even need to rest when I get home, or only need to rest for a short while.
The pain and fatigue and the big need to be able to rest a lot makes it difficult to live a completely normal life or have a job. I don't know how I feel when I wake up in the morning, if I've even slept, or how my day will be.
Some people manage to work with EDS, but a lot of people with EDS end up having to file for disability at a young age or at least long before they'd retire due to age.
When I last worked, I wasn't as affected yet by my EDS, it had only just started to show its ugly face, and I had no life outside of work. I worked, and I rested and I rested and I worked. Had no energy for social life outside of home or activities. That wasn't a good quality of life. My quality of life isn't great now either, but at least I'm able to take each day as it comes and do the best of the day that I get each day. Sadly I belong to the group of EDS'ers who needs to file for disability at a young age, and I'm just about to begin that process. Not because I want to, but because I see no other option.
Things may have looked different had I been diagnosed at a younger age, at a time before I ruined my body with physically demanding jobs. No one will ever know that. I was diagnosed just before I was 27, last year. My situation might have been the same even if I had been working in an office instead of warehouse...
EDS isn't always taken seriously. Some think it's just some hypermobility. It's so much more than that! It's not uncommon to have severe side disorders as well, such as POTS or Chiari malformation. Some of my symptoms may be POTS but it hasn't been investigated enough. I don't have Chiari malformation though, but it is not uncommon to have it with EDS due to the weakened connective tissue.
EDS is a life changing diagnose, you can learn to live with the symptoms but it's not always you have the possibility to live like you did before you became symptomatic and got diagnosed (if you're like me and not getting a rapid deterioration and diagnose until adulthood).
It's 9am, I should take my morning medicine, some more rapid and try to sleep, I'm still in a lot of pain... Just wanted to share my little list in the hopes that it may help someone out there who is in a diagnostic limbo or feeling like a lonely medical zebra.
Zebra hugs <3 p="">
No comments:
Post a Comment